Principal Investigators:

Purpose of the Study

Prior to 2000, there was virtually no systematic research about families of adolescents and adults with an ASD, about the transition from adolescence to adulthood, about the experiences of individuals with an ASD, or the impact on the family. Thus, the primary purpose of our study is to examine the lives of adolescents and adults with an ASD, the impact on the family, and the challenges of coping with a family member with this diagnosis.

In 2000 we began our longitudinal study of over 400 families of people with an autism spectrum disorder who live in Wisconsin or Massachusetts. In addition to examining the bi-directional effects of the symptoms of the individuals with autism and the well-being of their family members, our goals are to describe the quality of life of these families, assess the extent to which their service needs are adequately met, and to examine the plans they made and put into place for the future.

Our research focuses on the following questions:

(1) How do the symptoms of autism change over the life course and how do these changing symptoms affect the well-being of parents and siblings?

(2) What roles do mothers, fathers, and siblings take in the provision of care and support?

(3) What resources (social, familial, psychological) are most important in maintaining parental and sibling well-being?

(4) What community resources are the most important in supporting the individual with ASD to maintain as independent a life as possible?

(5) What are the major policy issues that need resolution to ensure appropriate services and options for adolescents and adults an ASD?

Acknowledgements

This project is supported by grants from the National Institute on Aging (R01 AG08768) and the National Institute on Child Health and Human Development (P30 HD03352). We gratefully acknowledge support from UW-Madison's Clinical and Translational Science Award Program for community intervention research (supported in part by grant U21 RR025011), the Autism Society of Southeastern Wisconsin, the Graduate School, the Waisman Center at the University of Wisconsin-Madison, and Sargent College of Health and Rehabilitation Sciences at Boston University.

Family Reports

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